Ending the “silent killer” myth

It was bad enough that Maria Pinheiro was waking up throughout the night to visit the bathroom. What was worse, she said, was feeling bloated all the time.

It was more than a feeling. “My stomach got so big I had to buy a bigger dress to attend a wedding,” she said. “Everyone thought I was pregnant. I just thought I was gaining weight.”

Those were not the only red flags that Pinheiro initially ignored. She had trouble eating and felt full after only a few bites. But it was the constant pains in her lower back and pelvis that drove her to the doctor. She thought they were the result of her overdoing it while repainting a room in her house.

She was quite mistaken, and learned a valuable lesson about the very real symptoms of what many believe to be a silent killer: ovarian cancer is not all that silent.

“I was crying and rolling in bed with the pain,” she remembered.

She was 42 years old at the time, and while the median age for those diagnosed with ovarian cancer is 63, she also learned an equally important lesson: older women are not the only targets.

Ovarian cancer is the second most common cancer of the reproductive system, but the most deadly, killing more women than all other gynecological cancers combined. Although it accounts for only 3 percent of all cancers found in women, it trails only lung, breast, colon and pancreatic cancers in mortality rates.

The list of luminaries who succumbed to the disease is long. Gilda Radner of Saturday Night Live fame helped bring the disease to the forefront. Ann Dunham, the mother of President Obama, died at the age of 52, while Coretta Scott King sought alternative treatment for her advanced diagnosis.

According to the American Cancer Society, almost 22,000 new cases of ovarian cancer are estimated for 2009 and 15,000 deaths. The incidence in black women is one of the lowest, but blacks die at a higher rate than all other minorities.

It’s little wonder that Pinheiro ended up in an emergency room after a night of extreme pain and discomfort. At first, doctors thought the cause was kidney stones. They later learned the real problem after reviewing the CT scan results — she had a deadly mass on her left ovary. She was transferred immediately to Boston Medical Center and underwent a complete hysterectomy the following day.

She had Stage IC ovarian cancer. As cancers go, that wasn’t necessarily all bad news. The good news was that the cancer was limited to the one stricken ovary. But the bad news was that the cancer had broken from the confines of the ovary and would require six cycles of chemotherapy following her surgery.
Pinheiro is now 57 and thankful that she learned those valuable lessons. “Thank God I had that pain,” she said. “It forced me to go [to get treatment] right away.”

And that’s the key — early detection.

When cases are caught very early — which occurs less than 20 percent of the time — the five-year survival rate exceeds 90 percent. It drops to 31 percent if the cancer spreads to other parts of the body.

Unlike cervical cancer, which touts Pap tests for screening and Gardasil for prevention, ovarian cancer offers no comparable solution. “We’re still looking for a test,” said Dr. Colleen Feltmate, a gynecologic oncologist at Brigham and Women’s Hospital, “But it’s like looking for a needle in a haystack.”

Although some tests are recommended for those of very high risk, Feltmate warns that they remain imperfect. The protocol consists of a transvaginal ultrasound every six months as well as a blood test — CA125 — that determines the level of a specific type of protein found in ovarian malignancies. But some studies have indicated that this protocol may not result in improved survival rates.

The problem is detecting the symptoms and making the right diagnosis. All too often, women are incorrectly diagnosed as having urinary or digestive problems and treated for those sorts of ailments.

But a study published in the Journal of the American Medical Association in 2004 reported that four symptoms in particular — bloating with increased abdominal size, urinary problems, pelvic pain and trouble eating — were found more often in those with ovarian cancer. The study further revealed that the symptoms signaled a stark contrast from the norm and were frequent, persistent and severe.

So significant was this finding that in June 2007, the American Cancer Society, in concert with the Gynecologic Cancer Foundation and the Society of Gynecologic Oncologists, formed a consensus statement agreeing that the four symptoms signaled ovarian cancer — and finally confirmed what Pinheiro learned the hard way: ovarian cancer is not a “silent killer.”

“Any symptom [of ovarian cancer] that persists for more than a couple of weeks deserves investigation and should not be ignored,” said Feltmate. She offered an example. “Any one whose abdominal size increases with no reason should have it checked,” she warned.

The exact cause of ovarian cancer is unknown, but certain factors increase its risk.

Heredity is one. Families that have a genetic predisposition for certain cancers — breast, uterine and colorectal — also have a higher incidence of ovarian cancer. Women who inherit these mutations have a 10 to 44 percent lifetime risk of developing ovarian cancer rather than the 1 to 2 percent in the general population.

Some cases of ovarian cancer run in families — even without a genetic connection. A woman’s risk is increased if her mother, sister or daughter has been diagnosed with ovarian cancer. The risk increases with the number of relatives affected.

Reproductive history is also a factor. One theory — the “incessant ovulation” theory — suggests that the ovaries may suffer tissue damage from the monthly release of eggs, thus contributing to the growth of abnormal cells. Therefore, women who started their period early, entered menopause late, or who never had children, may be of increased risk.

Thanks to earlier diagnosis and improved treatments, there are more survivors. Studies have shown that treatment by gynecologic oncologists who are specially trained in both gynecology and cancer has improved outcomes largely due to more aggressive and skilled intervention. Yet a cure for all cases remains elusive.

The cornerstone of treatment is surgery. According to Feltmate, surgery confirms the diagnosis, helps stage the disease and initiates intraperitoneal chemotherapy, which provides the medicine directly into the abdomen for those with advanced cases. The surgery — called debulking — involves the removal of the uterus, Fallopian tubes, ovaries as well as abdominal fat (omentum) and any other signs of disease.

“The idea is to get it down to no visible tumor,” Feltmate explained. “Less than one centimeter is ideal. It’s predictive of a better response.”

Chemotherapy typically follows surgery.

Even after all that, recurrence remains a possibility. “Cells may have escaped within the abdomen,” she indicated. “Cells can pop back up that were in hiding.”

And that is what happened to Pinheiro.

Two years after her initial surgery, the cancer struck again. This time it was more extensive — tumors were found near her kidney and colon. Despite her experience the first time around, Pinheiro sadly admits that she didn’t recognize the symptoms the second time. “I never thought it could happen again,” she confessed.

She was on vacation in Florida at the time and instead of making a doctor’s appointment, she blamed her pain on her brother’s “uncomfortable” car. She finally sought medical help and the diagnosis was not good — cancerous cells were left behind after the first treatment.

She had surgery again to remove the kidney and part of the colon — and more rounds of chemotherapy. Fortunately for Pinheiro, doctors were able to catch both cancers while they were still treatable. It’s been 13 years since her last surgery and so far she has remained cancer free.

Pinheiro leads a busy life. She is an interpreter and travels throughout the area wherever a Portuguese-speaking person requires her assistance. More important, she participates in the support group at Boston Medical Center.

And she is quick to tell others about the lessons she learned along the way.

“When women tell me they have a severe back pain [and there is no medical reason for it], I tell them to see the doctor,” she said.

Maria Pinheiro, who survived two bouts with ovarian cancer, struts out front in the 2009 Ovarian Cancer Walk. Pinheiro is wearing teal, the official color of ovarian cancer. Photo: Courtesy Of Boston Medical Center